Better End of Life Project
Aims
To understand the outcomes and experiences of people affected by death, dying, and bereavement in the UK by generating, retrieving, and synthesising evidence, and to frame this evidence in a format that compels policy-makers to take action.
Methods
This project has three workstreams which include, a cross-sectional survey of bereaved relatives and carers in the UK, mapping available care and services to identify inequalities and gaps and analysis of routinely collected data.
Impact
- Our policy mapping analysis was used as supporting evidence for the Health and Care Bill.
- The Better End of Life Report July 2022 was cited in the POST note on palliative and end of life care.
Project Team
Research Project Co-Investigator
Lecturer in Epidemiology and Palliative Care
Cicely Saunders International PhD Training Fellow
Director of Better Health & Care Hub
Post-doctoral research associate
Professor of Palliative Care (Visiting)
Effective start/end date: 01/01/2021 - 31/12/2023
Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity.
Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services.
Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.
Publications
Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK).Time to care: Findings from a nationallyrepresentative survey of experiencesat the end of life in England and Wales.Research report. London (UK): Marie Curie. (September 2024) https://mariecurie.org.uk/policy/better-end-life-report https://www.mariecurie.org.uk/policy/better-end-life-report
Johansson, T., Chambers, R. L., Curtis, T., Pask, S., Greenley, S., Brittain, M., Bone, A. E., Laidlaw, L., Okamoto, I., Barclay, S., Higginson, I. J., Murtagh, F. E. M., & Sleeman, K. E. (2024). The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med, 0(0), 02692163241248544. https://doi.org/10.1177/02692163241248544
Pask, S., Omoruyi, A., Mohamed, A., Chambers, R. L., McFarlane, P. G., Johansson, T., Kumar, R., Woodhead, A., Okamoto, I., Barclay, S., Higginson, I. J., Sleeman, K. E., & Murtagh, F. E. (2024). Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571. https://doi.org/10.1177/02692163241242329
Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research, 4(19), 19. https://healthopenresearch.org/articles/4-19
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981
The publication feed is not currently available.
Reports
- Better End of Life 2022. Mind the gaps understanding and improving out-of-hours care for people with advanced illness and their informal carers. Research report - (pdf) 2050 Kb
- Better End of Life 2022. Fairer Care at Home. The Covid-19 pandemic a stress test for palliative and end of life care. Research Report - (pdf) 494 Kb
- Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report - (pdf) 2065 Kb
- Emergency department visits by ambulance for people in the last 12 months of life by Integrated Care Board, for deaths in England in 2019 and 2020 - (pdf) 279 Kb
- Living conditions and cultural needs towards the end of life - Patient and public reflections on census data for people who died in England and Wales - (pdf) 912 Kb
Project Team
Research Project Co-Investigator
Lecturer in Epidemiology and Palliative Care
Cicely Saunders International PhD Training Fellow
Director of Better Health & Care Hub
Post-doctoral research associate
Professor of Palliative Care (Visiting)
Effective start/end date: 01/01/2021 - 31/12/2023
Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity.
Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services.
Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.
Publications
Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK).Time to care: Findings from a nationallyrepresentative survey of experiencesat the end of life in England and Wales.Research report. London (UK): Marie Curie. (September 2024) https://mariecurie.org.uk/policy/better-end-life-report https://www.mariecurie.org.uk/policy/better-end-life-report
Johansson, T., Chambers, R. L., Curtis, T., Pask, S., Greenley, S., Brittain, M., Bone, A. E., Laidlaw, L., Okamoto, I., Barclay, S., Higginson, I. J., Murtagh, F. E. M., & Sleeman, K. E. (2024). The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med, 0(0), 02692163241248544. https://doi.org/10.1177/02692163241248544
Pask, S., Omoruyi, A., Mohamed, A., Chambers, R. L., McFarlane, P. G., Johansson, T., Kumar, R., Woodhead, A., Okamoto, I., Barclay, S., Higginson, I. J., Sleeman, K. E., & Murtagh, F. E. (2024). Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571. https://doi.org/10.1177/02692163241242329
Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research, 4(19), 19. https://healthopenresearch.org/articles/4-19
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981
The publication feed is not currently available.
Reports
- Better End of Life 2022. Mind the gaps understanding and improving out-of-hours care for people with advanced illness and their informal carers. Research report - (pdf) 2050 Kb
- Better End of Life 2022. Fairer Care at Home. The Covid-19 pandemic a stress test for palliative and end of life care. Research Report - (pdf) 494 Kb
- Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report - (pdf) 2065 Kb
- Emergency department visits by ambulance for people in the last 12 months of life by Integrated Care Board, for deaths in England in 2019 and 2020 - (pdf) 279 Kb
- Living conditions and cultural needs towards the end of life - Patient and public reflections on census data for people who died in England and Wales - (pdf) 912 Kb
Our Partners
University of Cambridge
Hull York Medical School (University of Hull)
Principal Investigator
Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine
Investigator
Director of Better Health & Care Hub
Affiliations
Funding
Funding Body: Marie Curie
Amount: £620,953.86
Period: January 2021 - December 2023